Dr's appt.

[prettyflwrs]

I have a Dr apt coming up for my daughter. I am trying to get her evaluated for ASD.

At our last apt we were given an autism screener for toddlers, it focused on whether or not the child can point and communicate. My daughter is 4. She can point and talk.

The nurse practitioner said that she did not see any signs of an ASD because my daughter makes eye contact and says she has friends.

This is not the first time that we have been told this.

We pushed the nurse practitioner to refer her anyways and were able to get a referral to a ped. A regular ped, that is part of the same practice.

So I was wondering if anyone has any advice on how to get them to listen to us, and take our worries seriously?

Or any links to official screeners/checklists for aspergers or "mild" autism?

[Linda on the move]

Why do you think your DD has autism?

One thing I did for our family practice Dr. was type up a bulletted list of my DDs issues. He LOVED it. He put it in the file to as part of documenting why he recommended what he recommended.

Also, asperger's isn't generally DX'ed this young. Some kids are just a little quirky or slower to develop socially without really being on the spectrum. A great book is "Quirky Kids" by Klass.

[prettyflwrs]

So many reasons.

Her eye contact is not good.

Her language use is odd

she repeats phrases ie. every time she gets a drop of water on her clothes she says "wet is wet, wet is not dirty" several times in a row. The inflection and tone is the same every time she repeats it.

When she needs to go pee she says that she needs to go potty or pee pee. If you do not respond to her she will repeat herself. Again and again. If you don't respond at all she will continue to repeat that she needs to go potty until she pees on the floor.

If she watches tv she has to watch the commercials. If you fast forward them will throw a fit. (and say "let the commercials break")

She does imaginary play but it is very ridged and if you don't play the way she wants to she melts down. This is severe enough that I can not play with her all at with out a melt down.

She toe walks all of the time. There is no physical cause.

She flaps her hands.

Everything has to be the same day to day or it is a problem, usually a meltdown.

She wont wear jeans.

She has to say good bye to people 3 times or she has a meltdown.

She is very literal.

She spends upwards of 3 hours a day focused on letters and letter sounds.

She has always had social issues. ie when a child is mean to my daughter my daughter does not seem to "get it". She will continue to approach the child who is being mean until an adult steps in.

She has problem initiating play with other children her own age. She does better with kids that are around a year younger then her or with developmental disabilities.

She is very noise sensitive, throws a fit when I vacuum.

There is so much more, but that is the stuff off of the top of my head.

[prettyflwrs]

I also forgot to mention. We were dealing with a behavior specialist through SELPA and she observed my daughter in two different locations (both preschools) over the course of 2 months and then had a meeting with me in which she told me that my daughter is definitely on the autism spectrum.

Of course when later I asked her to put it in writing along with what she observed she said no. Because apparently she is not allowed to say that, even though she did.

So there is that too.

[babygirlie]

Has she always walked on her toes? I know when I went in for the early intervention testing that was something they watched for. If they always do it the muscles become unable to be flat footed. My dd tip toes a lot but she can flat foot which I guess was a huge plus. they said many kids get stuck in the tip toe position and need physical therapy to stretch those ligaments (or something to that effect).

I assumed you did autism testing through early intervention? I forget what it's called after 3. I just got my parent book. It's been several months and apparently this is a slow process. She is having her first real autism look this week, not just a teacher who works on delayed development. For the medical side of autism, again I am still waiting for my appointment and I think I had to have a doctor's referal but I'm not sure.

Squeaky wheel, momma!

[prettyflwrs]

Originally Posted by babygirlie

Has she always walked on her toes? I know when I went in for the early intervention testing that was something they watched for. If they always do it the muscles become unable to be flat footed. My dd tip toes a lot but she can flat foot which I guess was a huge plus. they said many kids get stuck in the tip toe position and need physical therapy to stretch those ligaments (or something to that effect).

She has always walked on her toes. When she was 6 months old and the dr tested to see if her legs could bear her weight she stood on her tiptoes. She has recently been evaluated by a Orthopedic surgeon because we thought that she needed physical therapy for it and it turns out that her ligaments and all are fine, great range of movement. She just walks on her toes all of the time because she wants to.

Originally Posted by babygirlie

I assumed you did autism testing through early intervention? I forget what it's called after 3. I just got my parent book. It's been several months and apparently this is a slow process. She is having her first real autism look this week, not just a teacher who works on delayed development. For the medical side of autism, again I am still waiting for my appointment and I think I had to have a doctor's referal but I'm not sure.

Squeaky wheel, momma!

No we did not do autism testing through early intervention. She has never been evaluated for autism by anyone even remotely qualified.

I asked for a referral from our family doctor when she was 1.5 and the doctor laughed at me and told me that my daughter was fine. I was her only problem. That was her exact wording.

After that I dropped the issue until this year when she started preschool. It quickly became apparent that she is likely to need accommodations (a quiet! highly structured classroom) so now we are looking for a diagnosis so we can get her a 504 or IEP. My daughters is being evaluated by the school but they have told me that they can only evaluate to see if she has any language delay, and I need to go through her doctor to get a diagnosis.

The behavioral specialists came into play when we filled out an ages and stages social/emotional at her first preschool. She helped get my daughter settled into the second preschool and then said that was all she could do.

All in all it is very confusing and the preschool teacher (the preschool is through the public school) and the SELPA lady keep contradicting each other.

I just want to make sure that my daughter is in an acceptable environment next year when she enters kindergarten. She just can not handle noisy chaotic environments. And I can not home school.

[Linda on the move]

I'd start by checking with your insurance company and find out what you can get covered for an eval and what hoops you need to jump through.

My DD had a "complete neuro-psychology evaluation" last year, but the name of the eval might be different for a younger child.

Are you still going to the same doctor that laughed when she was a toddler and said you were her problem? If so, I highly recommend that you change and find someone new.

I would write up the list that you put here (and any other sensory and social issues you think of, as well as any developmental milestones that were late and any issues showing up at preschool) and give it to the doctor, stating VERY clearly that you child has red flags for an autism spectrum disorder and you want her to see a developmental ped. I also recommend getting a OT eval for the sensory stuff.

Lots of kids on the spectrum can act just fine for a few minutes one-on-one. Mine act, and she can't get through school without accomodations.

[prettyflwrs]

Originally Posted by Linda on the move

Are you still going to the same doctor that laughed when she was a toddler and said you were her problem? If so, I highly recommend that you change and find someone new.

No we are going to a brand new doctor. We moved recently.

After that day I never went back to the original doctors office again.

[prettyflwrs]

and Linda on the Move, thanks for your suggestions.

I really appreciate your advice. When I get overwhelmed I have a hard time seeing what to do, and this whole situation with my daughter has been so overwhelming.

[Linda on the move]

Originally Posted by prettyflwrs

I really appreciate your advice. When I get overwhelmed I have a hard time seeing what to do, and this whole situation with my daughter has been so overwhelming.

Overwhelming is the word for it!

I hope things go well with your new doctor.

[Emmeline II]

Originally Posted by Linda on the move

Why do you think your DD has autism?

One thing I did for our family practice Dr. was type up a bulletted list of my DDs issues. He LOVED it. He put it in the file to as part of documenting why he recommended what he recommended.

This is what we did for our referral.

[nayma]

as a mama to a young girl dx'ed with asperger's, i have to respectfully disagree about age of dx. the research i've done seems to indicate that diagnoses are being made younger these days, as kids are being screened and recognized earlier. my daughter's dx was the end product of a five-part evaluation, and included speech, psych, ados, adi, dev. ped., etc. our dev. ped really feels that girls are especially under-diagnosed, and if they're highly verbal, that they're misdiagnosed altogether.
i would say that if your gut tells you something is up, and it sounds like it does, be the squeaky wheel. take a list, with very specific examples, and really tell them everything. don't be polite, or hope they'll see what you see. TELL them... and in the meantime, i'd start reading a little about autism in girls. i only say that because it helped me understand dd better.
also, i understand she points now, but did she point/wave by a year-old? use other non-verbals like shaking head for "yes." reaching to be picked up, etc.? respond to her name by a year? toe walking and flapping aren't classic signs of autism, per se, but things like truly impaired social interaction with peers, and atypical communication can be.
i hope i'm making sense -lol! it's late, and i'm a pretty tired. good luck with lining things up! if you take your concerns to a ped and ask for a referral to a developmental ped, they really should respect your request.

[prettyflwrs]

Originally Posted by nayma

also, i understand she points now, but did she point/wave by a year-old? use other non-verbals like shaking head for "yes." reaching to be picked up, etc.? respond to her name by a year? toe walking and flapping aren't classic signs of autism, per se, but things like truly impaired social interaction with peers, and atypical communication can be.

She did not wave until she was 2 almost 2.5. She pointed at around 16 months (I think. It was several months after a year but before 2). She did not respond to her name until she was almost 3. I don't remember her ever reaching to be picked up or shaking her head yes but she did use baby sign language from around a year on, (milk, all done, more, outside, and inside were the signs that she knew) but that was it as far as communication until she was 2-2.5.

She has something going on communication wise, it might not be an ASD but it is something. This is by far the biggest issue that affects us at home and as a family.

She has an amazing vocabulary but when she talks it is very hard to understand what she is saying. Not because it is not clear, she talks very clearly (to the point that I have had 3 or 4 strangers come up to me in the last year and complement how clearly she speaks) but because she uses words in weird (and yet very logical ways - ie the commercials are breaking).

Or if I say that we have to get dressed she thinks that I mean she needs to wear a dress, and she will get upset if I offer her pants.

I feel bad because almost every day I have to tell her that I don't understand what she is talking about. The individual words make sense but as a sentence I just don't know what she is talking about.

Her previous preschool said they thought she had an expressive language delay, I am not really sure what that means though. I thought it was a language delay so I requested the school district evaluate her language, they are still doing so but I have been told tentatively that they don't think she qualifies has having a language delay but they do see something odd about her speech.

[nayma]

fwiw, it sounds like there are real red flags for your daughter and ASD. doesn't mean that's what it is, but i would really encourage a team evaluation, if possible - speech eval included. where are you located?
here's an assessment that another poster has recommended to parents before... maybe it'll help a bit.
http://www.childbrain.com/pddassess.html